Gilbert syndrome and pain

[Kitty-soft-paws]

Hi joined ages ago but never posted before 👋🏼

Ok so, I have quite a few chronic illnesses and a lot of them have overlapping symptoms so it’s quite hard to differentiate between what’s causing what.

However, I have Gilbert’s my Bilirubin levels have been high for quite a while, my pee is very yellow even though I am hydrated, my poo also has an orange tinge to it, so the excess is obviously being excreted that way.

I have noticed that my levels are high at the same time that I also get a constant burning, sharp sometimes stabbing pain in the right upper abdominal quadrant in the liver area. I also have gastro issues and my meds don’t help this pain.

I have been ambulanced due to the severity of the pain and both times I have had ultrasounds and ct scans once with contrast. They have checked my liver gallbladder and pancreas. But nothing shows up.

Anyone else get pain with high bilirubin?

I’m still under the gastro/hepatologist waiting for my next appointment, I don’t want him to just dismiss me (I have been through that with so many other doctors) any ideas what I could ask him to do next? I was thinking of the capsule endoscopy? But is there anything else ?

Tia 💜

[Hidden]

I am sure our forum members will be along to share their experiences shortly.

I have attached our information on Gilberts Syndrome .

britishlivertrust.org.uk/in...

GIlberts syndrome does not 'usually' cause any symptoms, but there are always exceptions. I hope your hepatologist can help at your next appointment.

Take care,

Trust9

[Kitty-soft-paws in reply to Hidden]

Hi Trust9 thank you !

[Hidden]

Hi Kitty,

I can’t answer your specific question. Hopefully someone else may be able to help.

I was told by GP I have Gilbert’s, based on my consistent high, but not VERY high biliruben levels with no inflammation markers, at blood tests taken over some period of time. I was checked at my request, to see that I didn’t have any kind of Hepatitis, as had worked as dental nurse and in a hospice, and had had blood transfusion back in days before blood was tested, so after a few years I was told I could no longer donate blood because of the transfusion.

I joined a face book group called Life with Gilberts, about seven months ago, which has been interesting and helpful. There is a genetic test apparently that can confirm diagnosis. I’ve never had this. It seems your symptoms are quite common, whether due to Gilbert’s or not is often not known. Symptoms are exacerbated by stress, which I believe is due to hormonal responses. Certainly looking back my symptoms started at puberty and linked to menstrual times and especially menopause.

I have had similar symptoms, - my gall bladder was removed due to stones (although scan showed it was not inflamed) about 6 years ago. Following that I’ve needed to alter my diet and find the FODMAP diet helps me most as it seems my gut is ‘extra sensitive’.

Hope you feel that the consultant listens and doesn’t just dismiss you this time.

[Kitty-soft-paws in reply to Hidden]

Hey BobbinRobin thank you for your reply. It’s nice to know that others have similar symptoms.

I think I’ll check out that FB group 😉

Yes my scan was totally clear for stones although the gastro did say at the time they could be too small to pick up and then another said that wasn’t true 🙈 what are you supposed to believe!

Well I’m not giving up so they’ll probably just test me to shut me up 😂

Thanks again 🤗